• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

TV Doc on Crohn's

Kev

Senior Member
Hey aarond.. Thanks for that... it was excellent, and it cleared up something that has been confusing me for quite some time.. the role of heredity in getting crohns.

I'd heard two sets of seemingly di-opposed numbers on the impact on children of people with crohns. Docs told me my having it meant my kids had a 5 - 10% risk of getting it... yet, in an article from a west coast newspaper, a reporter said that offspring stood a 10 - 20 'TIMES' greater risk of getting this disease.

I just assumed that one of these numbers HAD to be wrong, a mis-interpreted number, something, right? Hearing the scientists talk about the real numbers, I finally GOT it... and it all made sense how both those statements were real, yet open to mis-interpretation, mis-understanding, mis-communication even.

Heres my take on it now.. (course, I still could have it wrong, but at least this take on it makes senses, explains the 'problem', and perfectly fits the numbers)

Typically, in my little neck of the woods, the incidence of IBD is 1:200 (up from 1:300 just a decade ago).. But, if you take that, express it as a percentage, its 0.5%. Now, if the child of a 'crohnie' has a 5 - 10% risk of getting crohns too, that IS 10 - 20 times the average. Hmmm, eventually the light DID turn on.

The other interesting things were the hookworm treatment (think I'll pass on it)
and the stem cell treatment... Pretty risky, but I'd take a shot at it for a 7 year or more remission. At least, unlike the hookworm chance, we're talking a real remission vs just alleviating the symptoms...
 
No problem Kev, i thoroughly enjoyed it too and there was many things it explained.

Yes i think im with you on the hookworm treatment,the thought of them burrowing makes my stomach turn. lol
 
I unintentionally tried the Tapeworm treatment. It did not work. When I got rid of them and all of the other bacterial critters I reverted to normal.

I will not be signing up for the Hookworm treatment.

D Bergy
 
I feel like the 1 in 200 or 300 (here in the US from what I've read it's estimated at 1 in 300-400, but could be higher due to misdiagnosis or UNdiagnosis) is so high just subjectively, because I feel like the only other people with Crohns are like a few thousand in the US, since I never seem to meet anyone with it. I've met I think 2 other Crohnies (other than the convention I went to where obviously they flock to it from miles and miles away) in my life other than this forum. I know though, obviously many times more people than 900 to 1200, so mathematically, my calculations make me...alone/depressed....I feel like I'm way off if I stand in a room of 600 people and say statistically one other person should have it. My only solace is the fact that we Crohnies generally don't like to share our burden, hence, the enigma of its occurances around us.
 
Last edited:
I live in Lebanon with a population of around 4 Million. In my life i only met 2 other people with Crohn's and 3 with UC.....
 
well iv emet quite a few in the uk funnily enough, ive got a cousin with CD and an uncle with UC. Ive also met a friends sister who has crohns. Quite weird really, but good because its all support and help at the end of the day as im quite young still. the older crohnies can help alot.
 
E

elp888

Guest
I watched the documentary and found it really depressing. Even though i've had CD for 14 years, it was like a slap in the face. Like the guy in the doc i have a feeding tube and hook myself up every night. It should be temporary, until my surgery end of may, but it made me feel handicapped & abnormal. Despite all the discomfort, pain, etc. i've never felt that way before. It sucks.

take care,
e.

ps.
As for meeting other 'Crohnies', everybody always seems to know someone with CD, but i've never met anyone else.
 

Kev

Senior Member
Well, I certainly wouldn't look forward to having such extensive surgery as he had, but I see it (watched it) as an excellent motivator to keep fighting this disease. It has renewed my resolve to quit smoking; and I think I have added ammo to pass up any alcohol the next time I feel tempted to have a cold beer or glass of wine. I also felt that his upbeat attitude was very inspirational; and the info contained in the doc was quite... well, promising. Life can/does go on.

As for other 'crohnies'... I dunno. I meet some on every visit to my GI's office; and way more on visits to the GI clinics or the IBD dieticians clinics; yet we don't mesh into a meeting... maybe that's just my lack of social skills at play. I know my GI sees over 2,000 patients.... I find that number just staggering to comprehend... yet I have no reason to doubt it. So, I know other 'crohnies' are out there. As for the total numbers... the 1:300 figure was circa 1996. The new number (for Canada) is now 1:200.. As to how accurate these are, I think I've no choice than to take them on faith; my personal exposure gives me nothing to dispute them OTHER than my occasionally feeling I'm all alone dealing with this disease... but obviously, that just isn't the case. Otherwise, all the work seen in the doc just wouldn't be 'in the works'. And, this forum proves to me, time N time again... "WE are not alone". Think that's one of its major strengths
 
I have met a couple of people with Crohn's. One in the hospital which scared the crap out of me, figuratively.

I am pretty much a solitary person anyway, so it does not bother me too much being the only guy in our town with the disease. I really do not think about it much, but if my symptoms came back all that would change quickly, I am sure.

Now I have to find a new doctor to prescribe my LDN. The one I am using now has changed his policy of prescribing on a telephone consult. It is not real practical for me to drive 500 miles for an appointment. Oh well, I will figure out something. I think I will press the local physicians a little. Since I am already using it, they may not be so resistant to prescribing.

I could likely drop it altogether, but I prefer this method to the other.

Dan
 
E

elp888

Guest
Don't get me wrong, I thought the documentary was informative and the guy commands respect for his energy and attitude towards life with illness. It was just that seeing it on TV made my own situation more 'real'. For the past months my life has gradually become smaller and narrower, but the changes were slow, so you get used to it. Somehow the doc worked as a mirror in which i saw myself/my life, and it just made me really really sad.
Fortunately (knock on wood) my personal situation and upcoming surgery aren't as bad as his, so after surgery i should be able to get on with life 'tube' free....
man, i daydream about real food, can't wait!
 

butt-eze

Superstar
Thanks for sharing the video Aaron.

I'm emotional because I don't like to face the facts of Crohn's. However, this is what hit me the most...
I was frustrated by the facts on smoking. I've always been opposed to smoking because I grew up around parents who smoked and wouldn't quit for anything. They still smoke! Anyways, despite being told that it could increase the symptoms of crohn's he has continued to smoke. Why, if you're so interested in finding a cure, would you continue to make your disease worse by smoking. I know there are several smokers on this forum. I'm not trying to offend. However, having been in a coma because of lung disease I feel that I know first hand how awful and scary it feels to be unable to breath. I'm pissed that my parents, in-laws, friends continue to smoke even though they held my hand for three weeks while I struggled to survive.
Which leads me to the discussion of chemo from the video. I underwent chemotherapy for my lung disease. My disease is/was called BOOP-Broncial Obliterans Organizing Pneumonia. I was unresponsive to 1 gram of IV steroid daily. My pulmonologist consulted with physicians throughout the US and decided upon chemotherapy as the only course of treatment that would save my life.
I have no regrets about the chemo. Yes, it saved my life. The bonus was that it also kept me in remission.
I think I would definitely try stem cell research but unfortunately I live in a country run by a freakin monkey (sorry but he is so incredibly stupid!). For those scared of chemo, don't worry. I know, easy to say. I would do it again. In fact, my pulmonologist has presented the option to me of staying on pill form of chemo for the remainder of my life. It would likely mean I would never have a flare again. Despite this option I discontinued chemotherapy last August.
The hook worm idea is gross but I would do it. I didn't hear anything that sounded too dangerous. Not a fan of worms or parasites but I'm also not fond of crapping 20 times a day.
As for the DNA studies...I have had my DNA tested and I am predicted to have crohn's through that test. My colonoscopy confirms that. The truth is I'm less interested in why I have crohn's. I have it! I want to know how to make it better or go away. I know, I know. We need to know the source before we can find the cure!
Lastly, when I was explaining to my supervisor (who is also a nurse) about my crohn's she was shocked to hear that I had undergone chemo. She remarked that my situation must have been very severe to shutdown my system and restart it with chemo. It wasn't until this conversation that I gained a better understanding of exactly what chemo did to me. Sometimes we do need to clear the slate and just start over.
For those who are interested the chemotherapy I used was cytoxan. Cytoxan is typically used for people with breast cancer and lung cancer. I was on IV chemo for 6 months and pill for for 6 more months. I will say that this form of therapy is/was considered experimental. Especially by my insurance who refused to pay for my chemo. That was a fun ordeal!

Thanks for letting me rant!!! Sorry for the length and I apologize if any of my comments were offensive.
 
butt-eze, agree totally with the smoking comments regarding the man on the documentary.

Chemotherapy is a severe step but at the end of the day if it helps, i would do it too.

All the best

Aaron
 

Kev

Senior Member
Hey butt eze.. Great post. You shouldn't feel any need to apologize for it. You've got every reason, and then some, for feeling as passionate about it as you do. If I can use a crude analogy, it would be akin to the victim of a hit N run accident being passionate about drunken drivers, what have you. As for the subject, he is no different than a lot of us smokers... he knows that smoking is indefensible, and it's even worse for folks with our condition. However, it really doesnt' change the other fact... smoking is an 'addiction', reportedly 2nd only in strength to 'herion' addiction. I dunno. Never been addicted to herion. Take me, I would love nothing dearer than to be able to get away from this habit safely if I could. I'm not making excuses, or looking for sympathy. I do feel that a 'lot' of people don't see smoking as a 'sickness', an 'addiction'. That smokers are relegated to 2nd or 3rd class status as human beings, many times by 'people' who should know better. Health care workers are often the worst. Imagine, if I might make this comparison, a health care worker treating someone with IBD as if they were 'responsible' for their disease. I'm the same person I was when I was a non-smoker... but the 'fact' that I've fallen prey to the addiction again somehow makes me 'less' of a human being, or a patient, in some folks eyes. I don't see the 'fairness', the 'equality' in that. I AM to blame for any smoking related health issues arising from my 'addiction', but am I to be held to blame for the 'addictive' nature of this disease. If that's the case, then perhaps all of the places, clinics, etc., for narcotics addicts, or alcohol addicts, or gamblers, etc., should be shutdown and disbanded. Hate the disease, not the victims.
Anyway, as I said, I applaud your post. I didn't take any offense, and I am NOT trying to defend smoking. Just trying to remind folks it's a nasty 'addiction'.
 

butt-eze

Superstar
Thanks for your thoughts Kev. I do believe that your feelings are just how you perceive the situation. I love my mom just as much as my husband and son. I do not view her as second or third class. You can argue that I am different then others. Perhaps you are made to feel 2nd or third class but has anyone actually stated that you are somehow less then them because of your habit?
I feel that perception is everything. I perceive that people think I'm fat solely because I eat poorly. Until I tell them about my two years of steroid therapy they can't begin to understand why I look the way I do. I often compare my inability to eat well to the addiction of smoking. There is no sense for me arguing against the addictive qualities of smoking. It just makes me angry.
We once had a patient come in with his face burnt. He smoked a cigarette but forgot to remove his oxygen first. That is so radiculous. You can be sure to hook yourself up to oxygen and have a lung disorder yet you can't attempt to quit the addiction that has gotten you to that place! Yikes! I think that addiction is also coupled with a lack of will power. I certainly have a lack of will power. So, again I can't say anything (but I do!).
We all have our irritations and smoking has just been mine. I truly hope that some day someone will listen to my story and realize how freightening it can be to be unable to breath. Instead those who are around me that smoke just roll their eyes and disregard how it hurts me.
By the way, for those who truly want to quit. My mother-in-law did it by using chantix. So, it's possible to do it if you really want to. How bad do you want it?
 

Kev

Senior Member
Well, my comment about feeling like 2nd or 3rd class... wasn't due to individuals, but to treatment of 'smokers' in general. Many clubs, taverns, drinking establishments, etc., had screened off rooms, put in special, expensive air filter systems so people could drink, have a smoke, and be totally 'isolated' from folks who didn't smoke. Apparently, that wasn't good enuff. Many work places had setup special break areas where, again, smokers could go and stay totally separated from non smokers. All of those were outlawed. No smoking is allowed in any public or 'private' structure (except ones own home, for now).
No one can smoke in public within 5 meters of any doorway, window, or airvent within provincial boundaries. No one can smoke inside a vehicle that has any passenger under the age of 18 in it. No store or establishment can advertise tobacco or tobacco related products. Nor can they display any tobacco product.
One area has even outlawed smoking anywhere publicly within the town limits.
All of the new hotels built in the area are totally smoke free. They don't offer smoking or non smoking rooms. If you smoke, then your insurance premiums are higher. And, if you apply for work, an employer CAN ask if you're a smoker.
I don't know statistically what the health statistics are for smokers compared to people who are chronically obese (just as a comparative example). I don't know if one or the other stand a higher risk of heart attack, stroke, high blood pressure... Yet insurance companies AREN'T permitted to charge higher rates based on a person's physical stature... and an employer isn't permitted to (at least not blatantly) screen out potential employees based on their stature. So, for the sake of pure argument, smoking N being overweight presented similiar health risks for certain, key diseases... then why is one targeted, the other not.
And, if they can do it, and get away with it for one; don't be surprised if/when it spreads... to discriminate against everyone who isn't perfect(ly healthy). Just my thoughts... God, what would happen if hospitals started triaging this way?
 
Ha, the smoking crusade is being replaced by the sugar crusade. Like all the reports about them trying to remove vending machines from schools. Its funny because they say it Liberals who will not let us live as we like, by eating or smoking ourselves to death.

Personally I hate the fact smokers get breaks at work regular workers don't. Heck I hate the excuses that Smokers get because of smoking. They call in much more than a regular worker, and people are understanding because they smoke. Can you imagine if someone called in because of gambling? I was drunk, now I'm tired, I gambled all night. Sometimes it seems like there is a social bond that goes on with people that smoke and if you are not of that crowd you just get left out. Though you get to live longer.

Does anyone have any info on the chemo treatment? I want to hear more about how that works.
 
Well, as rediculous as the mandates about vending machines in schools, it's the sad fact that we need laws to keep child obesity in check. Because parents are not parenting in many instances, and let their kids eat all the junk they want while they play Grand Theft Auto and swear. It's even more sad that we need to help keep adult obesity in check with other mandates proposed.

The trans fat laws are great, IMO though, as those things are simply frightening if you've read many of the studies I've seen. It's not just obesity, it's cancer, heart disease, mental deterioration, psychological issues, name a function or system in the body and it's probably adversely affected by the stuff. Flies won't land on margerine if you leave it out, but they'll land on feces. Does that tell you enough?

I personally enjoy the old smoking joke by a comic "Having a no smoking area in a restaurant is like having a no peeing section of a public pool" lol
 

Kev

Senior Member
Tells me if I ever visit your place, and you offer me a sandwich, to pass on it. ;-)

As for no smoking sections of restuarants being like no peeing sections of pools, I like the joke. But the bar, club, tavern OWNERS who spent 10's of thousands of dollars building laminar flow, totally segregated 'buildings within buildings' so that they could meet the extremely stringent requirements that the govenment imposed to permit them to have a 'smoking' area within the law.... only to have the law changed 2 years later 'outlawing' all smoking... It literally brought many of these businesses to the brink of bankruptcy... they were never able to recoup their losses... And, under the new regulations, the industry has seen a sustained 30% loss of revenues... meaning lost revunue, lost taxes on same, lost jobs, lost taxes on the income from those jobs. Why? So smokers couldn't go to rooms built specifically for them under the law and smoke in such a manner it wouldn't impinge on anyone else. Show me the logic, the fairness, the common sense, let alone common decency, in that legislation.
While doing so, may I remind folks that literally $7 per pkg of tobacco here is tax... or a taxation rate of approx 82% Exactly who is profiting from all this??

OK, off the soapbox.. Time to have a puff
 
Cytoxan for Crohn's

Hi butt-eze

I noticed that you used Cytoxan and it helped your Crohn's if I understood correctly.

Can you tell me what dose you got in the monthly IV's, and has your remission been maintained since you stopped it?

There are 4 published studies (with small groups) about IV Cytoxan in Crohn's, and they report about 75% rapid (within 8 weeks) remission

Thanks!!

Hopeful
 
I know I'm coming in a bit late but I had to say this: never have I worked in a place that allowed smokers extra breaks. If you work a full day, you are entitled to 20 minutes break by law. So when I smoked I would take this as several cigarette breaks. Non smokers were encouraged to go and sit in the staff room with a drink. Other jobs I work at, where you weren't entitled to a break, didn't allow you to go for a cigarette either.
 
Top